Obtaining the views of children and young people with autism spectrum disorders about their experience of daily life and social care support

Abstract

Accessible summary Children with autism spectrum disorders (aged 7–18 years) were interviewed about their experience of living at home and in short term care. Parents and caregivers were also interviewed and, when the child had little or no speech, he or she was observed in both settings. Pictures and schedules were used to prompt the children but using them, or allowing parents to interrupt, sometimes made it difficult to be sure that the children’s views were completely their own. It was also important to use questions that meant something to the children. The children were generally happy with their life at home. Those who went for short‐term breaks liked some activities and individuals, but some did not like the noise and the rules.SummaryChildren with autism spectrum disorders (10 boys and 4 girls aged 7 to 18 years) from a shire county in England were interviewed as part of a study examining the experience and attitudes of families towards daily life and short breaks support. Techniques for obtaining consent and eliciting the children’s views are detailed, including triangulation of data. Data were collected on the children’s experience of day‐to‐day life, social workers, and short breaks services, and their wishes. Qualitative data analysis was undertaken using a template approach. The children were positive about family life, although most activities reported were solitary. None understood the role of social workers. Those who attended short breaks enjoyed some activities and peers’ company but were disturbed by noise and staff discipline. Difficulties faced in carrying out the research, and limitations arising from the research methods and the nature of ASD are acknowledged, and factors that were helpful in the process are identified.